Did I cause my PA?: So! I was visiting... - Pernicious Anaemi...

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Did I cause my PA?

brenanddave profile image
42 Replies

So! I was visiting my doctor yesterday and voiced my concerns about gabapentin as he wants me to up the dose as says I can have up to 3000 mgs aday. I'm resistant having read what I have on the F/B gabapentin page. I told him I preferred to take daily b12 injections to treat my PA than take more painkillers. Then I told him how long I had been unwell before my b12def was picked up. He is a new doctor for me but still part of the same large practice. He started to get very irritated and told me I had caused this by heavy smoking from 35 yrs ago! I smoked what everyone else did back then. And because I had a problematic drinking after pts from finding my young brother suicided. And then 4 yrs later my father suicided.I stopped drinking for 5 years to address this reaction when I was able. And then would drink socially. I chose not to drink any alcohol 4months ago as I am committed to my health. and it seems counterproductive to getting better. He then bailed me out of his office as my time was up. I felt upset that he chose to focus on what he felt I had done to make myself sick and not the fact my condition had been miss diagnosed for all these years and that I have so much neuropathy pain now. I felt very passive aggression from him and just wanted to cry when I left his office. I couldn't sleep last night as I felt so upset. I am very guarded with doctors now anyway having been gaslighted in the past from them. I think this gets his backup. He likes to make the decisions but its my body. IS HE RIGHT! Did I cause this? I tried googling it but couldn't find any info to back it up. Sorry for the long rant. i am still upset about how unwell I am and that it was missed for this many years and it felt he was turning it back on me to protect them.

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brenanddave
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42 Replies
jade_s profile image
jade_s

No, absolutely not your fault! And he is a very irresponsible & sadistic doctor for suggesting that.

Autoimmune diseases are what they are & plenty of new research points to genetic causes.

He needs to apologize to you.

You are doing the right thing by injecting as much as you need. Please do not doubt yourself. We are here for you x

I'm very sorry about your brother & father. Xxx

jade_s profile image
jade_s in reply to jade_s

For example this very recent paper in Nature

Genome-wide association study identifies five risk loci for pernicious anemia

We conduct a genome-wide association study meta-analysis in 2166 cases and 659,516 European controls from population-based biobanks and identify genome-wide significant signals in or near the ..[a list of various genes]..., thus providing robust associations between pernicious anemia and genetic risk factors.

nature.com/articles/s41467-...

jade_s profile image
jade_s in reply to jade_s

Sorry for my outburst. I will edit my post, wrote it in the middle of the night and it was maybe a bit over the top.

JanCymru profile image
JanCymru in reply to jade_s

jade_s if your post was over the top I don't think any one of us here would be anything but understanding, given how we are all generally treated by the medical profession. 👍

jade_s profile image
jade_s in reply to JanCymru

Thanks Jan 😊 The ALL CAPS and starred ** out curse words were probably quite unncessary 🙈🙊 I do apologize to brenanddave and everyone again.

As you say, we all probably understand where the emotions come from!

JanCymru profile image
JanCymru in reply to jade_s

Absolutely jade_s - I can vouch for a few curse words myself!! 😃

Cobalt1312 profile image
Cobalt1312

brenanddave I'm so sorry you had that experience. That doctor is 'missing the forest for the trees' as they say. He completely missed the opportunity to support you in your current health struggles. It seems to me like maybe he got frustrated that you questioned him about trying to get you on a really high does of medication, gabapentin, when you know it's the B12 injections that help you. I think you're absolutely right to question him. I take gabapentin for pain when I can't bear it, but being on it constantly is fairly horrible for me - I can barely digest food and I'm dizzy, feeling slowed and out of it.

From my perspective, you did the right thing in sticking up for yourself when he tried to push a big drug dose on you. You know yourself much better than he does. Instead of taking the opportunity to learn from you and listen to you, he bullied you. Your job is to advocate for yourself, not take care of his ego. You did the right thing. What a shame he is so self-absorbed, it's not ok for him to be rough and unkind with you.

Grrr.... Especially after all the pain you've endured in your life, you deserve to be treated with kindness and respect. This doctor is essentially victim blaming you. NOT ok. Sending big hugs your way!

Espeegee profile image
Espeegee

My mother and my sister both had PA, my mother was not any sort of drinker and never smoked, my sister had smoked in her youth for a while but not heavily at all and gave it up once she was pregnant, she wasn't a drinker either. She is a life long faux veggie so may have contributed a bit to her PA. I've never smoked and although I was a social drinker I've never drunk heavily on a regular basis, my B12 is now hovering above insufficient so the chances are I'm heading that way. PA in my case would seem to be a genetic issue along with hypothyroidism that both my mother and sister have and I have pretty much got there officially now though had symptoms for years. I can't get help with either condition.

Is there any incidence of PA in your family? Your smoking and drinking won't have helped your health but if I was you, I'd research any connection between that and PA, I'd wager there's probably very little, when you next go, ask for a double appointment and then present your case based on what you find and if he still insists, ask him politely for links so that you can read up on it. If there aren't any then he's going to make a fool of himself and you have the right to complain about his attitude. At the end of the day he's there to help you, you have shown that you want to help yourself, that's a big plus in my view and it should be evident to him and he should build on that. If not, ask to see someone else in the practice or move if you can to another practice altogether. You are important to you, don't let anyone undermine that with their prejudices.

brenanddave profile image
brenanddave in reply to Espeegee

Thanks Espeegee Funny! When I was a child I remember my mum talking about P/A more than once but I don't know why. As far as I am aware I don't know if she new whether she had it but she did die at 63 of a heart attack. I am one of nine children and my oldest sister who has now passed from cancer had reumatoid artharitis, shogrens disease and ulcerative colitis so I wouldn't be surprised if she had P/A. I have another sister who has 2 sons with auto immune diseases. To be honest! He was disrespectful of me and I can't see myself bothering with him again. I did hear of another doctor at the practise that is knowledgable with auto immune diseases. I think I will check him out. But I will continue SI and looking after my own health. No more expectations on doctors apart from respect. x

grandmacutler profile image
grandmacutler in reply to brenanddave

PLEASE be aware that doctors prescribed smoking to patients in the 60s to help with stress.

brenanddave profile image
brenanddave in reply to grandmacutler

Yes!!! That's right. Thank you. My Doctor as a child smoked. Everybody did back then

BadHare profile image
BadHare in reply to Espeegee

Being vegetarian or even vegan doesn’t cause PA as it’s an autoimmune disorder. It can cause B12 deficiency if people don’t supplement or eat appropriately. I did both fastidiously, but still need to inject daily.

DiNL profile image
DiNL

omg - this is awful to read. U do not deserve this at all. No one does! When we are diagnosed with any kind of disorder i think we all go through a process of blaming ourselves and wanting to know why we have it. The thing is…. Auto immune disorders are not created by alcohol abuse. Sure alcohol will deplete B12 but they don’t create or cause PA! If your arrogant doctor knew anything about auto immune disorders he would never have said this!

Please stop beating yourself up. Give yourself as much B12 as you need - this is your body not his!

brenanddave profile image
brenanddave in reply to DiNL

Awww!! Thanks for those wise words. And yes! I didn't need him to blame me for my condition, we always think I must have done something so its not hard to believe it if the doctor says it is. It just seemed like he was using his words as a weapon when he said it. Wanted to get me back for questioning him about his treatments x

Sunshine1932 profile image
Sunshine1932

I thought I would reply to hopefully bring you some comfort. I was tested for PA and it came back negative but I had already started injections because my B12 was extremely low and I had all the normal symptoms and then some.

I have drank heavily over the years, took street drugs and prescription drugs and I also had bulimia and I eat a high sugar diet.

I have quit all the drink, drugs, caffeine and soon to be quitting the sugar. Over the years I have been labelled a alcoholic, too sensitive, chaotic, not good enough etc etc. I too have had some pretty tragic life experiences hence why I self medicated.

I use to feel really down trodden by professionals and took their words as gospel and that I was a waste of space or wrong in their eyes.

It then suddenly dawned on me that I can empower myself to live life the way I want it and say up yours to those around me who made my life miserable which included doctors and consultants.

I took ownership for my health and got to working on improving my mental and physical self.

I self inject every other day, removed toxic people from my life, including family members, I surround myself with positive people, attend like minded groups, get out in nature and most importantly I LOVE MYSELF MORE THAN I EVER HAVE IN LIFE AND I DONT LISTEN TO ANY RUDE OR NEGATIVE BEHAVIOR FROM ANYONE.

As Mr Woo says in the sitcom Benidorm, check yourself before you wreck yourself. Something that most humans don't aspire to do.

So what you drank. PA is not caused by too much alcohol.

We humans can however destroy our stomach lining from ingesting anything from eating daily processed foods to pharma drugs. Non of us are perfect and can only do the best we know how to.

Have a wonderful weekend

brenanddave profile image
brenanddave in reply to Sunshine1932

Thank you Sunshine for sharing your story with me. I'm sorry you have been through so much ! Life can sure have its obstacles. Its not always easy. Thank you for your wise words! And no we are not perfect but we are perfectly perfect lol xxx

Wheat profile image
Wheat

Health Carer ? no way. Unbelievably bad behaviour, and complete rubbish too. Don't doubt yourself, he was having a tantrum because you wouldn't accede to him. . Obviously, you will not see him again, Love and hugs x.

brenanddave profile image
brenanddave in reply to Wheat

Thanks wheat! No! I can't bring myself to see him again. He disrespected me. I have my own b12 and SI so will just find a doctor that can simply arrange blood tests when I need them and what ever b12 I can get from them. x

charks profile image
charks

My partner and I always record our GP appointments. We use our iphones. They pick up quite well even when concealed in a trouser pocket. I suggest you do this at your next meeting. And then complain about this GP's disgraceful behaviour.

Espeegee profile image
Espeegee in reply to charks

Just as long as you don't refer to a covert phone recording, it's not legal and can't be used as evidence I believe so you would say you wrote it down afterwards while it was still fresh in your memory.

grandmacutler profile image
grandmacutler in reply to Espeegee

Recording in public spaces is legal in Canada & USA (I believe) as long as one party gives permission. This can be the one doing the recording,

charks profile image
charks in reply to Espeegee

It may not be legal but it can be played to other members of his practice to show how badly he is behaving towards his patients.

Espeegee profile image
Espeegee in reply to charks

I can well imagine how that would go down. It is my belief that they would be more horrified at their colleague being recorded without permission than anything he was saying. He would be expressing his "professional" opinion which he's entitled to do and a mere patient would most definitely be in the wrong. I really wouldn't.

brenanddave profile image
brenanddave in reply to Espeegee

Yep! Wouldn't see the woods for the trees! lol

helvella profile image
helvella in reply to charks

This is the British Medical Associations view on recording consultations and it might be a good idea to read it (even though tending to the doctors' side):

bma.org.uk/advice-and-suppo...

MoKayD profile image
MoKayD

In the early days of discovering I had B12 deficiency, my GP sent me to a hematologist who practices at one of the best hospitals in the world (Johns Hopkins). This highly educated specialist spent most of the time questioning me about my drinking habits and other life style choices. I told him I have one or two glasses of wine a month (at my book group meetings) and I eat meat, etc. He looked at me like I was lying. I felt so humiliated. Since that appointment I have stopped trying to find out the reason I am B12 deficient and have taken control of my own health. I don't understand this need some doctors have to blame the patient.

brenanddave profile image
brenanddave in reply to MoKayD

Yes! I understand that feeling. When I said to my last doctor that I remember another doctor saying on a couple of occasions that he didn't understand why my bloods cells keep reading large. MCV and MCH always high. My last doctor said! Well you can't blame him, you have had a problem with drinking at times. I couldn't believe he thought that was a reason not to investigate for so many years.x

Espeegee profile image
Espeegee in reply to brenanddave

What's interesting is that doctors prefer to rely on "science" ie blood tests and not symptoms so even if your lifestyle was an utter shambles, surely if those magic tests highlight you're not well, shouldn't they treat you even if they feel you're too blame. That's like saying to obese patients "you can't have the gastric banding because you did this to yourself"! Very judgemental and not at all helpful.

brenanddave profile image
brenanddave in reply to Espeegee

Yes! I agree! I can't believe he is more focused on blaming me than the fact doctors have missed what was blatently in front of them for years. Its so obvious by lab tests that I had this now I understand blood tests more. I think it was diversion from them missing it.

Nackapan profile image
Nackapan in reply to MoKayD

Yes my daughter when very ill at uni was not listened to when she reported zero alcohol zero nicotine zero sny recreational drugs.

They missed b12 deficiency folate deficiency megobolastic anaemia .

My mum a non drinker, non smoker got b12 deficiency.

They missed bowel damage from radiotherapy that may have caused b12 deficiency ??

PA is pA an autoimmune condition/ disease

Alcohol, like prescription drugs csn deplete b12 vitamin c. To name s few .

brenandave ignore that doctor move onto the next .

We all have pasts.

Now is what is whats important and seeing another doctor .

There are some good ones to work with.

Cherylclaire profile image
CherylclaireForum Support

Too much of an onslaught of tragedy in one family - hard on you. You have been strong enough to stop doing harm to your body. You have accepted that after traumatic experiences, you drank. But you have survived that and overcome it.

I was once told by a haematologist that my short-term memory loss and cognitive issues were due to having starved my brain of oxygen as an ex-smoker. Nothing to do with B12 deficiency. But then she also told me that B12 was highly addictive, toxic and carcinogenic. Even my GP raised an eyebrow when I told her that !

Yes, smoking was quite popular - I even remember when I was a child, our GP often had a pipe on the go. They didn't know any better either.

Please don't let this GP take anything away from your progress. You are trying to make sensible health decisions, and he should be supporting that.

We are not all the same, you only need to read a couple of days' posts to know that - and fortunately, not all GPs are either; even in the same practice. Find a better one.

Wishing you well.

Espeegee profile image
Espeegee in reply to Cherylclaire

Trie that about GPs, there is one in our practice with whom I had a chat on the phone and he was emphatically against statins and won't prescribe them. I said to him I didn't know how they hadn't sacked him lol, almost heresy!

JanCymru profile image
JanCymru

Gosh brenanddave I feel for you, as does everyone here. What a complete a*se of a doctor. How cruel can the medical profession get? As you have said, it is your body, and you have to live with the consequences of any medication you take, so fully understand and support your questioning of that doctor about the gabapentin etc., Really hope you find a solution and support at your surgery. So very sorry about your brother and Dad, heartbreaking. x

Oneash profile image
Oneash

My mother in law was a nurse. In 1960s they were all given cigarettes for their health! 🤣 So lots of medics got addicted to smoking. Oh Doctor heal thyself!

brenanddave profile image
brenanddave in reply to Oneash

Yes Oneash!! My family doctor did too. Lol

BadHare profile image
BadHare

Medical gaslighting seems to be widespread. Doctors’ pig headed ignorance alarms & angers me!

I’d like this A2 size on every doctor’s wall:

Surrendered doctor

Accept that when it comes to the side effects of treatment the patient (or the in-laws) are likely to know best.

Accept that my job would be more interesting if I learned to co-ordinate the research efforts of my patients rather than continued to dictate to them.

Accept that patients continue to come to me not because I am good at my job but because society has made it impossible to get medicines except through people like me.

Accept that my actions are dictated by ghostwritten articles and inaccessible data mediated through guidelines that I haven’t the guts to stand up to.

Recognize that far from being founts of wisdom and compassion my colleagues and I can get incredibly nasty if questioned. I am an obstacle to work around more often than a source of support.

Medically Unexplained Symptoms point to limitations in current medical knowledge or perhaps my medical knowledge. The term is not a euphemism for hysteria.

From Prof David Healy’s website.

davidhealy.org/surrender/

brenanddave profile image
brenanddave in reply to BadHare

Hahaha! That is gold! I'll put it on my wall so net time I have expectations of a doctor I'll read it Thanks for sending that BadHare!

BadHare profile image
BadHare in reply to brenanddave

Your welcome! It would be funny if it wasn’t so true. I want to post one to every GP & doctor in the country!

At least some doctors like Prof Healy realise their colleagues are ****. I’ve taken textbooks in to show consultants. Lucky that we have this & other good HU forums to get help or I’d be bedridden.

Mashie44 profile image
Mashie44

I have refused to see one of the partners in my practice because of how badly he treated me. He is the practice "specialist: in neurology and I never want to meet him again - it says so in my file.

You can do this (assuming there are other doctors of course). But please don't try to rely on someone so cruel and so stupid. Even if you have to change GP - you health and mental well-being deserve better.

brenanddave profile image
brenanddave in reply to Mashie44

Yes! I totally agree! I wish I could have stood up for myself but I was still so unwell after covid. I believe bully's can tell when they can take control of you. These guys are forgetting that we are employing them and they get paid good money for their services. I'm sacking mine too lol. They haven't helped us anyway lol x

BadHare profile image
BadHare in reply to brenanddave

They think the have provenance over our bodies & treat us like imbeciles when we need help. The GP I used to see asked if I was a control freak because I didn’t want the drugs he was pushing (antidepressants for two skiing injuries). I swapped to another in the practice who didn’t seem much brighter but less rude.

GGourmet profile image
GGourmet

I would ask for a second opinion from a different GP there.

Not to reflect on New Zealand but, by coincidence, I was staying in Auckland this year and had to see a GP. With all sincerity, he said he could see my brain tumour through my ear. Thankfully, I used him for my B12 injection and this appointment was for an inner ear inflection. I knew I’d be shot of him in just a few months, when I returned to the UK.

Please get a second opinion.

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